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Ellie

@madknittrsteaparty.bsky.social

250 followers 190 following 450 posts

Love crafts, history, stories, natural world & spending time with husband, children, family & friends. When M.E /CFS & POTS doesn't stop me - which is most of the time right now. Usually found in a dressing gown. Devon, UK ♿🌿🏳️‍🌈🏳️‍⚧️🇺🇦

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Ellie @madknittrsteaparty.bsky.social · Jul 23

To my followers- I am sorry I can't donate to Gaza accounts at this time. I am disabled, unable to work, & spend much of my life in bed.

Please continue to follow me.

To UK government- we're watching a genocide in real time & you do nothing. This is unbearable. I'm ashamed of my government.

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Tom Kindlon @tomkindlon.bsky.social · 12h

ME Research UK:

A team of researchers have published a paper assessing the effectiveness of the care provided for people with severe or very severe ME/CFS at a specialist clinic in Norway.

Read more about what the team found here: tinyurl.com/2ftvrar5

#mecfs #PwME #severeme #cfs

Specialised care for people with severe or very severe ME/CFS
Researchers have published a paper relating to the outcomes of a specialist clinic in Norway for people with severe or very severe ME/CFS.
Care is based on the 2021 NICE guidelines. A 'four-step supportive therapy programme' also offered: 1. High dose thiamine and oral rehydration solution 2. Nicotinamide adenine dinucleotide and hydrogen, Coenzyme Q10, and vitamin B12. 3. Low-dose Naltrexone. 4. Low-dose aripiprazole.
24 (17 very severe, 7 severe)
No change
Some improvement Significant i ---0 7 (29%) improvement
—0 5 (21%)
► 12 (50%)

12 (50%)
50% improved and 50% experienced no change. Despite these observations, more research is required.
Saugstad et al., Fatigue: Biomedicine, Health & Behavior (2025)
6114 INFORM. INFLUENCE. INVEST.
RESEARCH UK
SCO36942

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Tom Kindlon @tomkindlon.bsky.social · 12h

James Allison at Newcastle University is looking for people in the Northeast of England to take part in his ME Research UK-funded research. See the details in the poster to find out more.

#MEcfs #CFS #PwME

Take Part in ME/CAS Research
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
We are looking for volunteers to help us understand how the brain responds to pain in people who suffer from ME/CFS.
You may be eligible if you: • Are able to converse in English. • Are 18 years of age or older. • Have been given a diagnosis of ME/CFS. • Are able to attend two study visits.
Participation involves: • A visit to complete questionnaires and for examination of your head, neck, jaw and mouth. • A second visit to measure electrical activity in your brain using sensors on your scalp, whilst applying pressure to your finger and a muscle in your cheek. • For some participants, we may use a non-invasive nerve stimulator to painlessly stimulate a nerve in your neck during the second visit.

RESEARCH UK
To reimburse you for participating, £20 will be offered in gift vouchers (£5 for the first visit, £15 for the recording visit). Reasonable travel expenses will be reimbursed.
James Allison, Chief Investigator Professor Justin Durham, Principal Investigator School of Dental Sciences, Newcastle University For more information please call 0191 282 1612 or email james.allisonanewcastle.ac.uk
The Newcastle upon Tyne Hospitals NHS Foundation Trust
Elucidate CFS Poster Version 3 Date: 21/09/2022
NHS
IRAS: 315122
Newcastle University

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Dr Nicola Clague-Baker @claguenjc36.bsky.social · 3d

Full article: Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study www.tandfonline.com/doi/full/10....

Proud to have another article published thanks to all the co-authors and especially all the participants

Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study

People living with ME/CFS and LC frequently live with post-exertional malaise (PEM), which is associated with impairments in aerobic metabolism. They often use pacing with a heart rate monitor (HRM...

www.tandfonline.com

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Kelly @broadwaybabyto.bsky.social · 1d

Another devastating blow for the disability community as this administration cuts almost every employee responsible for administering funding & oversight for IDEA (Individuals with Disabilities Education Act).

Education should be a basic human right..and disabled kids are just as deserving.

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Jackie Nicholson @jax1712.bsky.social · 1d

#Immigrants in London 🙏

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Bold Politics with Zack Polanski @boldpolitics.bsky.social · 1d

Solidarity with all trans and intersex people having their existence debated every time a tv host hasn't done their prep and can't think of any more questions

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National Trust @nationaltrust.org.uk · 18h

Check out these ancient finds 👀

Pictured here are a Roman ring key, military helmet stud and incense bowl shard. They're just some of the artefacts unearthed on excavation and metal detecting surveys at Attingham Park in Shropshire.

A close-up of a hand holding a Roman ring key. They key section of the ring is square and like a belt buckle in shape.

A close-up of a hand holding a round stud that would once have been attached to a Roman military helmet.

A close-up of a hand holding a ceramic shard in its palm. The shard shows lines of frilly decoration.

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Rachel Charlton-Dailey @rachelcdailey.bsky.social · 18h

Politicians on mental health awareness days: mental health matters! It’s ok not to be ok!

Politicians every other day: all these lazy scroungers are going to the Drs, saying they’re depressed and being handed thousands in benefits THIS MUST STOP

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Ellie @madknittrsteaparty.bsky.social · 1d

Happy Birthday 🎂!

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Smile For ME @smileformeuk.bsky.social · 1d

Happy 13th Birthday Smile For ME!

A special thank you to those who have donated, fundraised, shown support, nominated someone for a Smile or left us a kind message over the years, it means more than words can say 🩵

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James Kennedy ✊️ @jameskennedy.bsky.social · 1d

I agree, Stop The Boats

Bloody oligarchs coming over 'ere on their mega yachts, stealing our public assets, influencing our government, exploiting our work force, dumping their waste into our rivers & expecting the tax payer to foot the bill for their billion pound government contracts & bail outs

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Adam Fare 🖤🤍💜 @adamfare1996.bsky.social · 1d

This incessant focus on employment, even for people who can potentially work, is ridiculous in my view.

The primary focus for any disabled person should be supporting them to maximise their quality of life before anything else is even considered.

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National Trust @nationaltrust.org.uk · 1d

Have you seen shades of autumn creeping in near you?

Our gardeners expect a gradual build of colour to wow visitors over the coming weeks: buff.ly/sBCrmCY

Photo: Sheffield Park and Garden, East Sussex by Nick Dibble

#BBCNatureWeek

Looking across a still pool of water in a landscape garden. The water is surrounded by trees and shrubs in shades of green and red on a sunny day

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Dave Goulson @davegoulson.bsky.social · 1d

Officially extinct yesterday, RIP slender-billed curlew

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Ginger Billie @gingerbillie.bsky.social · 2d

I do not think, in my life, I have met a disease that is as cruel, long term, as ME/CFS.

I wrote a card to a researcher thanking them for their work and in it put, “I am too sick to live but too well to die”.

Tom Kindlon @tomkindlon.bsky.social · 2d

"I still desperately want to live"

A woman who is turning 30 who has spent the last decade living with severe ME reflects on her life

meglobalchronicle.wordpress.com/2023/12/23/i...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social

I still desperately want to live
Gepubliceerd op 23 december 2023
One of my favourite films is 13 Going On 30 (honestly, it’s mostly for Mark Ruffalo) and lately I’ve been thinking a lot about Jennifer Garner’s character Jenna chanting “thirty and flirty and thriving” at 13 in her parents basement; then I try to remember all the things I said to myself about what my life might look like at 30 when I was just 13.

I wanted to be a forensic psychologist and a vet and a mechanic and a midwife and an ecologist and an infant school teacher and a counsellor and a forensic pathologist (until I realised dead bodies of any species freak me out). I never could decide what I wanted my life to look like when I grew up but I knew I wanted to do so much.

I turn 30 next month and I have spent the last decade living with Severe M.E. There have been months of time within that when I would have been classed as having Very Severe M.E and periods of time when I would have been more towards being Moderate-Severe. There have been times when I have felt desolate and times when I have felt so much joy. There has been great loneliness and there has been the love of community. There have been times when I did not know if I’d live to see my 30s and times when I had unbelievable amounts of hope that things would get better. I have survived it all.

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Katharine Cheston @kacheston.bsky.social · 2d

An incredibly moving post:

"I have spent the vast majority of my 20s in bed and alone in the darkness and silence"

Screenshot of an article:

"We all have these big ideas about what our 20’s are supposed to look like, how they’re supposed to feel and who we’re supposed to be. I’ve watched through a screen while the majority of people I grew up with have spent their 20s living; been to university, travelled, started careers, fallen in love, had families, bought their own homes, experienced so much.

I have spent the vast majority of my 20s in bed and alone in the darkness and silence
Meanwhile, in my 20s I have had to have my most basic needs seen to by my Mum, my family, my friends, complete strangers. My Mum and I have spent hours upon hours on the phone to Receptionists, Doctors, Nurses, Social Workers and Carers, often begging for help. I have tried countless medications and experienced countless side effects and struggled to manage countless symptoms by myself. I have been unable to speak and unable to feed myself, unable to sit up and unable to stand, unable to cope with the presence of other people and unable to be safely left alone. I have spent the vast majority of my 20s in bed and alone in the darkness and silence, unable to access the outside world and all it has to offer."

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Barack Obama @barackobama.bsky.social · 2d

Congratulations to new Nobel Peace Prize laureate María Corina Machado for her courageous struggle to bring democracy to Venezuela.

Live Updates: María Corina Machado of Venezuela Is Awarded the Nobel Peace Prize

www.nytimes.com

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RSPB @rspb.bsky.social · 2d

Today’s #AutumnArrivalSpotlight is the Jack Snipe…master of the stealth and wobble! 👀

These charming little waders sneak into wet meadows and bogs from northern Europe, bobbing up and down as they feed along the water’s edge.

How's that for a Friday smile?

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🇨🇦Ian - #RLessThanOne @simpson-ian.bsky.social · 2d

What?

Esther @elhopkins.bsky.social · 2d

Wow. Just had a post of mine removed by the NHS for saying ‘COVID is a predominantly airborne virus’.

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Esther @elhopkins.bsky.social · 2d

No on Facebook. It was reported as misinformation. Totally staggering.

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Esther @elhopkins.bsky.social · 2d

Wow. Just had a post of mine removed by the NHS for saying ‘COVID is a predominantly airborne virus’.

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Pam Keith @pamkeithdc.bsky.social · 2d

Here’s my question:

Why is there no pro-democracy billionaire buying the largest gaming companies, or voting machines, or social media platforms, or media companies?

Maybe more fundamentally, why are there no pro-democracy billionaires at all?

Is it just that that level of greed is incompatible

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Zack Polanski @zackpolanski.bsky.social · 2d

I called this out on #BBCQT last night and I'm calling it out again now.

He is gaslighting a nation.

The Guardian @theguardian.com · 2d

Farage insists ex-Reform UK Wales leader convicted of bribery is ‘bad apple’

Farage said he was shocked by Nathan Gill’s admissions relating to pro-Russia statements Nigel Farage has insisted his party’s former leader in Wales who was convicted of taking pro-Russian bribes was a “bad apple” who betrayed him. The Reform UK leader was in Caerphilly campaigning for his candidate in a forthcoming Senedd byelection when he was asked about his links to Nathan Gill. Continue reading...

www.theguardian.com

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Zack Polanski @zackpolanski.bsky.social · 2d

Next week, the Green Party will defend Worcestershire Councillor Hannah Robson in the High Court.

The Reform UK candidate is hoping to overturn our election win!

Can you help us defend Hannah and democracy from this attack? Please donate if you can 🙏

donatetothe.greenparty.org.uk/make-sure-we...

Make sure we defend democracy in Worcestershire - Green Party

In the event that there is any money left over after the legal matters have been settled, including if we are able to recover some or all of our legal costs from other parties, then these remaining fu...

donatetothe.greenparty.org.uk

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KimBo @zapperfan7.bsky.social · 2d

On #BBCQT - Fiona Bruce said that the audience and public didn't want to press Reform UK on their dodgy links to Russia.

I disagree.

RT if you agree it's in the public interest for Reform to explain about their links to Russian money and bribery!

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